New to the community

[Burakakgl]

hiya!

I’ve recently come across this forum and I feel sorry that I didn’t before. So much to learn and share!

Here is my story. My mum was sadly diagnosed with PD 5 years ago (which then changed to MSA very recently). My parents did not tell me this first as I was in wedding preparation at the time, so they waited until I got married. Then they broke the bad news. I felt so bad because I remember being mad at my mum, asking why she is not smiling why she looks like she is frozen at the wedding. Turns out it was because of the meds 😢

she was ok at the beginning but after having severe muscle pains 2 years after she decided to undergo “deep brain stimulation (DBS)” operation, which in hindsight, was a decision made in rush. She was fine for another 1.5 years, taking less medication and able to cook, clean, walk & talk etc. however, since last year, her conditions deteroriated significantly. I live in London and they live in Istanbul. I try to visit almost every month. Everytime I visit her, I see that her condition is getting much worse. Her posture has changed, she falls often, she cannot walk without any assistance..and for the past month, she is really struggling with her speech. Everything is so difficult but seeing her not being able to speak properly is really heathbreaking, as I notice some of her friends / relatives are turning their back, not calling her as they used to..she is also struggling a lot in social gatherings. I saw her crying all of a sudden when she is with others😢

i am really worried about what is about to come. In just a matter of 5 years (she may have been diagnosed a bit late though) she has gone from a very happy, chatty, smiley person to totally someone else. Doctors had told us she’d be ok for many years, especially after the DBS, but especially what I ‘ve seen in the last 1.5 years I cant stay hopefull sadly. I also feel bad about my dad who looks after her 24/7. Looks like we are coming into our final stage, if not we are in it already. Do you think it is normal to detoriate so quickly? Is there a way coming back from this, or slowing it down at least?

thank you all.

Burak

[chester2107]

unfortunately this can happen everyone’s journey us different, my dad didn’t get symptoms until he was 79 so he had a good active life until then , sadly he passed in 2020

he never took any medication though

but he tried his best to keep happy , such a lovely man

so sorry for your mum and your dad and family , keep strong for him

and her , sending positive thoughts

elaine x

[Burakakgl in reply to chester2107]

Thank you very much! And very sorry for your loss 😢

[chester2107 in reply to Burakakgl]

Thankyou

[thedjsupreme]

My deepest sympathies. Remember the real person/soul is still in there. You can still make moments, Remember the good times and share them with her

[thedjsupreme in reply to thedjsupreme]

I'm 52 and just diagnosed with in 3 months. Just at the start of this adventure

[Burakakgl in reply to thedjsupreme]

Yes you are so right! we are doing our best to do that.

Very sorry for your diagnosis. Please stay positive! Everyone’s journey is unique so try ti focus on the good ones. All the best

[thedjsupreme in reply to Burakakgl]

We're trying our best

[diyducky]

Hello Burak,

I would direct you to look at the MSA Trust website. It will have many of the answers you are looking for.

Thank you for sharing your story. I often wonder how my sons view their Dad's diagnosis with MSA. They don't talk openly about how it. I suspect they are being strong to help me.

Kind Regards,

Lorna

[Burakakgl in reply to diyducky]

Thank you.

I really dont know if we are doing any good by opening up. The more we talk about the illness and how bad we feel, the more it gets depressing for everyone and we find ourselves thinking about it all the time. I guess there needs to be a balance. Always very helpful to cherish the old times and laugh on them, and stay away from the bad feelings we have.

[ReverendBadger]

Yes MSA can make one deteriorate quickly, it,s my own experience.

On 2/FEB/23 I was driving, walking sometimes with a stick,needing some help dressing and washing,able to do light meal prep and ok speaking on phone voice a bit quiet.

Today balance v.poor,fell 5 weeks ago and needed outside help to get up, speech broken up,dribbling,hatdly able to walk without a helper to mpush/pull left foot leg, most;ly unable t0 nget out of bed or up from sitting without help, can only eat with fingers or off small spoon, need help with toilet. I have had carers 2x a day since april and recently 4x a day/

This speed of deterioration is therefore not unknown but dues appear to nbe faster than average according to my consultant.[ vHowever there is no way of predicting what mujght happen next week month or year.

I think you just have to do your best with thiscdisease day 2 dau.

[Burakakgl in reply to ReverendBadger]

Thank you, and my deepest sympaty for what you had to go through.